Living with MS
Parenthood and MS:
Arriving at a decision that works for you
It's common for individuals in their twenties
or thirties to consider if and when they will have
children. It's a big decision! Add multiple sclerosis to the mix and many women – and men – can
feel overwhelmed.
The choices have immediate implications, but
also long-lasting ones as babies grow into children, then teenagers. What is the right thing to
do? And how can you plan with a disease
as unpredictable as MS?
Multiple sclerosis can be
diagnosed at any time in
life, from childhood to late
adulthood, but for most
people the first symptoms
occur between the ages of
15 and 40 – the time when
people are finishing
school, starting careers
and planning families.
The good news is
that there is no right or
wrong answer about parenthood and MS. Decisions
about whether or not to
have children will be as individual as you are. Factors such
as fatigue, your current physical
status, and the course of your disease
will be a part of your deliberations.
Let's face it: going through pregnancy and
delivery, and then raising a child, is mentally and
physically exhausting whether or not MS is a factor. But often these issues seem trivial to women
and men who want a child to hold and nurture for
years to come. This feeling is no different for people with multiple sclerosis. After all, multiple
sclerosis does not impact the parental instinct or
the ability to be loving and caring.
By Gemma Graham
Communications Intern
“I had some reservations about becoming a
parent… We [my husband and I] debated on what
to do and decided to try for children. Facing a
future without children just seemed implausible
to me,” says Judith Cooper, a mother of two, ages
10 and 14, who lives in Dauphin, Manitoba.
The physical limitations sometimes associated with MS mean that people who are considering
starting a family must plan ahead. It is imperative to have the appropriate support (spousal,
family, professional), routines and equipment in place to ensure MS does not
either impede the parenting experience
or be detrimental to the health and
safety of both the parent with MS
and the child.
“I was always frightened
to hold my daughter in case I
dropped her or fell, so I got
a bassinet that had wheels
on it so I could wheel her
everywhere with me,”
says Andrea ButcherMilne of Barrie, Ontario,
whose daughter is now six.
She was diagnosed with MS
in 1997.
Women and men with
multiple sclerosis who are considering having a child should ensure all their questions and concerns are addressed by appropriate
healthcare professionals including a neurologist,
physician / midwife who will supervise the pregnancy and delivery, MS nurse, occupational therapist (to assist with adaptations to the home) and
genetic counsellor.
There are numerous questions ranging from
continued on next page
MS Canada, March 2006, p. 1
becoming pregnant, managing the pregnancy and
labour and then extending to parenting itself.
While each individual and couple have unique situations in respect to MS and life circumstances,
the following questions and answers can provide
the basis for further discussion with your partner
and/or physician.
Can MS be passed to my child?
There is a slightly increased risk that children of parents with MS might develop the disease compared to the general population. The
risk varies depending upon factors such as the
number of family members with MS and
whether MS is on both the maternal and paternal sides of the couple.
However, in up to 80 percent of families, one
parent is the only family member to have MS and
thus the risk their child will develop MS over their
entire lifetime is approximately three to five percent. While this risk is higher than the general
population risk of 0.2 percent, it is still very low.
Put another way, there is over a 95 percent chance
that your child will not develop MS.
How will MS impact my pregnancy?
Many women with MS experience a remission
of symptoms during pregnancy, especially during
the last three months, although this can depend
upon the clinical course of MS the woman is experiencing at the time of conception.
“Pregnancy was the best
I ever felt,” says Judith
Cooper. “I think my emotional state of being so
happy contributed to
me doing so well.”
However, there
appears to be a higher risk of MS relapses
within three to six
months of delivering
the child, but again this
varies. “During pregnancy I didn't have any clearly
defined attacks,” says Andrea
Butcher-Milne. “Six months after my daughter
was born my MS symptoms actually got worse so
I went on one of the disease-modifying drugs and
that really helped.”
The possibility of an MS relapse following
the birth of the baby should be planned for so
MS Canada, March 2006, p. 2
that you have the appropriate assistance in
place to help care for the baby while you recuperate from the relapse.
It makes sense to talk to a physician (probably an MS neurologist) who has expertise treating
MS symptoms and relapses and who is knowledgeable about the safety of specific drugs and other
exposures during pregnancy.
Overall, having good support from your
healthcare team during this period is essential.
That team will probably include your obstetrician,
family doctor, midwife, neurologist and MS nurse.
Is it okay to have an epidural during labour?
What will labour be like?
There is no definitive answer to either of
these questions. Labour is an individual experience. Fatigue should be taken into account, as
labour can be very exhausting. Discuss fatigue
with your physician and ask what options and
support will be available to you if you become too
tired during labour.
“My first delivery was natural; the only drugs
I received were Demerol and another drug to numb
the area for the episiotomy. I was in labour 23
hours and was treated as a high-risk patient due to
my MS,” recalls Judith Cooper. “My second labour
was C-section because I was stuck at 5cm [dilation]
for almost 15 hours and was very tired.”
If you choose to have an epidural anesthetic to block the pain, again plan
ahead and have a discussion
with your doctor as to
whether the procedure
is right for you. Keep in
mind that some anesthesiologists will not
administer an epidural
to a woman with MS
because it means inserting a needle into the epidural space of the spine.
Make sure the hospital where
you plan to deliver has an anesthesiologist willing to administer
one, if that is your decision. You should also be
aware that some women – totally unrelated to MS
– encounter problems with the procedure such as
low blood pressure, headaches, allergic reaction
and/or relaxation of the muscles needed to push –
meaning assistance is required to deliver.
Other methods to help with labour include
using various breathing techniques of which the
Lamaze method is probably the best known. An
epidural relieves pain while Lamaze involves
acknowledging the pain and using breathing
methods to manage it. It also teaches effective
pushing methods to help deliver the baby.
Based on your physical ability, you and your
doctor or midwife should decide which is best for
you. A woman should not be categorized as having a “high-risk” pregnancy solely on the basis of
having MS. Keep as many options open as possible. The goal is to ensure the safest delivery for
Dads have MS too:
What men need to consider
A lot of the issues that women experience can be
applied to men, especially in the age of coparenting. But there are a few differences.
Medications: According to Gwen Alcock, MS nurse
and coordinator of the St. John's MS Clinic in Newfoundland and Labrador, “Most men make the decision to come off their therapies, particularly the disease-modifying therapies, when they are trying to
conceive with their partner.” Talk to your physician
about this decision and ways to manage MS while
you are trying to conceive. A man also has the
choice of freezing sperm before starting treatment.
Labour: MS fatigue may stop you from being with
your partner through all the hours of labour, but you
can still provide important emotional support. You
and your partner could consider having a close
family member and/or friend spend part of the
labour with your partner while you take a break.
Finding a balance and using the support and resources available are important skills to learn for
both labour and the years to come.
Child care now and in the future: Finances, the
physical status of the partner with MS, and the
needs of the child may dictate who is responsible
for primary child care. Discuss this openly and continue to do so as your MS and the child's needs
may change over time. Also, don't be surprised if
some stereotypes about male roles and parenthood arise – these can be emotionally ingrained
rather than logical. Remember, a father does so
much more than teach his child to ride a bike.
Talk your expectations through with your partner
and keep a perspective about all the different ways
someone is a parent.
both mother and child.
Judith Cooper found it helpful to learn
as much as possible in advance. “We took the
pre-natal classes, saw the film on labour, did
the stretches, the breathing and the coping
techniques.”
Some women with MS – as well as women
who do not have MS – have C-sections if problems develop during labour. It is smart to plan
for this possibility since a C-section requires
more recovery time – sometimes up to several
weeks. Both Andrea and Judith had C-sections
and were able to turn to family for assistance
while they recovered.
Can medication for MS be used during
pregnancy and breastfeeding?
There are no clear-cut answers to this questions
since at present data is limited. Generally women
are advised not to continue the disease-modifying
therapies when planning to conceive, during pregnancy and while breastfeeding. (See the article on
page 10 for the results of one recent study, Beta
interferon therapy use during pregnancy.)
This is an issue for Danielle of Nova Scotia,
who is considering becoming a mother. “My
biggest concern about having children is that I
would have to come off my medication,” says
Danielle, who is 25 and was diagnosed in 1993.
“I've been taking [one of the therapies] for seven
years, and it works for me. If I have a child, I
could be off my meds for almost two years.”
Again, planning ahead is key. Ideally, a
woman who wants to become pregnant should
stop the disease-modifying therapy (and other
medications as indicated by her physician) before
becoming pregnant. She should remain off the
medications during the pregnancy and then
resume them following delivery, if she is not planning to breastfeed the baby. Another good strategy is to have a discussion with your neurologist or
MS nurse about ways to manage MS during pregnancy and breastfeeding.
Andrea Butcher-Milne followed this advice. “I
wasn't on any medication before I got pregnant. I
decided to wait until I had my child before I began
to take medication for MS,” explains Andrea. “I
didn't want to go on meds for a bit and them come
off for several years and go back on.”
continued on next page
MS Canada, March 2006, p. 3
What about fatigue and parenthood?
Fatigue is an all too familiar symptom for
people with MS as well as for mothers taking care
of a newborn. A baby's needs can't be placed on
hold so methods and routines to manage fatigue
need to be developed to ensure you can care for
your baby. Consider extra help with household
chores, sleeping when the baby sleeps, and enlisting help when the baby is fussy. Getting as much
rest as possible is the key to keeping up with your
baby's needs, and your own.
“You are definitely going to get fatigued so
plan ahead once the baby is born,” cautions
Andrea. “Plan to take twice as much time to finish
a household chore than before you had a baby to
take care of. It may not take twice as long but give
yourself that time frame in case it does.”
It is wise not to wait and see if you can handle a baby and MS fatigue. Instead, you and your
partner should have the resources and support in
place before the baby is born. For example, you
can organize family and friends to help out several times a week. Or you may be able to hire a
housekeeper to take over household chores for a
period of time.
While adjustments may have to be made, parenthood is a viable option for most women and
men with MS. Adjusting for physical limitations,
fatigue and other MS symptoms is part of the
challenge of living with this disease. Children
need love and support, and you can provide those
things regardless of MS. Focus on what you can do
– rather than on what you cannot do!
“Children take a lot of resources, a lot of
money and a lot of patience – a lot of everything!” exclaims Judith. “But they give you a
tonne in return.”
“Absolutely go for it,” Andrea adds.
Gemma Graham's mother has MS and this
subject is very close to her heart. She adds, “As
someone whose mother had MS while I was growing up, I can confidently say that my mother was
no less capable of raising two children than any
other woman.”
Beta interferon use during pregnancy
linked to miscarriage, low birth rate
In September 2005, researchers at SickKids
Hospital in Toronto reported that women being
treated for multiple sclerosis (MS) with beta interferon therapy have an increased risk of miscarriage or
low infant birth weight.
The research strongly suggests that women with
MS who become pregnant while taking beta interferon should contact their physicians about discontinuing the drug until delivery. In addition, women
who are considering becoming pregnant and are
using beta interferon therapy should talk to their
physicians about how long they should discontinue
therapy before becoming pregnant.
The research team found that continued use of
beta interferon therapy through pregnancy resulted
in a 39 percent increase in miscarriages, a 30 percent increase in non-live births and a lower overall
birth weight in live births compared to women who
stopped therapy and to healthy controls.
“Most importantly, we recommend that women with
MS who are pregnant or planning on becoming pregnant speak with their neurologists. Discontinuing
beta interferon therapy during gestation should not
necessarily increase the risk of relapse of MS, as
pregnancy tends to reduce such risk,” says Dr.
Gideon Koren, the study's principal investigator. The
researchers also recommend women with MS
resume interferon therapy very soon after delivery if
they do not intend to breastfeed.
For more information, see the medical update on
the MS Society website (www.mssociety.ca – go to
Research and then Research News).
Many thanks to Dr. A. Dessa Sadovnick,
professor of Medical Genetics, University of
British Columbia, for her expert advice during
the development of this article.
See page 4 about the new pregnancy
registry project.
This special insert was made possible through an unrestricted educational grant from
MS Canada, March 2006, p. 4